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(8 replies, posted in General Discussion)

Thank you.  I just went out and got the lotion.  My mom is giving it a try right now.  Do you know what this itching is all about?  Why does it happen?

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(8 replies, posted in General Discussion)

HI. I am hoping that some of you can shed some light.  The itching is new for my mother and it is on the tops of her legs.  I called the doc and they said her bilirubin levels were normal last time she had labs (3 weeks ago) and to call if it worsens or she itches in other places.  They asked if she was jaundiced and she is not.  Has anyone had experience with itching?  What causes it and what can be done to help?
Thanks a bunch.
Susan

Hello, all.  After 6 weeks of procedures, brushings, biopsies, etc., the tumor board met last night and reviewed by mom's case.  They are not sure-ugh!-, but believe the cancer is in a stricture (which is stented due to thickening) in an intrehepatic duct. They cannot get a positive pathology report for cancer, but she has many symptoms and her liver tests are way off.   I must say again, they are not sure about the exact location of the tumor, but want to do a liver resection on the part of the liver that contains the stricture.  My mom is going to have a 2nd opinion where I live next week. This is so frustrating and inconclusive.  Has anyone had this type of situation?
Thanks for reading.
Susan

Hello.  My mom is currently sees a doc at MUSC and we feel the need to get some second opinions. They are doing a lot of guessing about her diagnosis and we do not feel that they have had much experience with CC. Can anyone help recommend a doctor in the SC or NC area and let me know how to go about getting a second opinion?
Thank you so much!
Susan

Hi, Marions. My mom in located in South Carolina and I am in PA.  Her CA 19 9 level was 149.  She had a PET scan which showed hypermetabolic activity in the upper part of the liver, but the first brushings were not taken in that place...very confusing. That is another reason why they don't think they can do surgery-they are not sure where the cancer is coming from.  I was thinking of sending info to Mayo and Johns Hopkins.  Do you have any suggestions?  Thanks so much.
Susan

Hi. My family and I are really confused.  My mother had brushings done at one hospital that came out cancerous and then she was sent to a medical university for further evaluation.  They did more tests and their brushings came out with abnormal cells, but not cancer.  We are going on 5 weeks now without a correct diagnosis because the medical univ. has now requested the slides from the first hosptial to compare and evaluate.  I spoke to the doc yesterday and he says if it is cancer, she would not be a candidate for surgery because they could not locate an exact tumor(apparently they looked and looked and could not find a tumor during the tests she had gone through) and they would not know where to operate.  He said that they would not want to remove part of her liver and have it be the wrong part, leaving the cancer behind. They spoke about chemotherapy as possibly the only choice for her. She has dialated intrahepatic ducts and one stricture which is now stented.  I am so confused and this does not make any sense to me.  Have you heard of this before?  Can anyone steer me in the right direction? My poor mom is getting sicker by the day.  Thanks to all of you.
Sue

Hello.  I am about to start the process of second opinions for my mom.  Have you had any experience with Washington University School of Medicine cancer physicians at Barnes-Jewish Hospital?
Thanks.
Susan

Hello. We are awaiting tests results to come back for my mother.  There has been some talk about "intraductal cholangiocarcinoma".  No tumors or masses are seen, but there are cancer cells on the inside of her bile ducts and the ducts are dialated and "irregular" in appearance.  Does anyone have any information about this?  Do any of you know of some places that might specialize in this type of cholangiocarcinoma?
Thanks so much.